The reality of living with multiple long-term conditions

The things that people living with long-term conditions (LTCs) tend to normalise might be quite surprising. Living with pain is a big one. Managing multiple medications is another. There’s something unique about the nausea that comes from a belly rattling with pills. Or the mental gymnastics required to schedule medications when some need taking eight hours apart with food, others on an empty stomach. You don’t eat when you’re hungry; you eat when your pill schedule says you can.

For those living with multiple long-term conditions (MLTCs), it’s exponentially more complex. Added to this is a system that operates around individual specialties and gives me contradictory advice, and where my clinicians don’t seem to talk to each other or help me navigate all this effectively. Despite all the clinical expertise and innovation in the health system, it makes me lose confidence that it can really respond to my needs.

The King’s Fund’s long read Improving clinical co-ordination for people with multiple long-term conditions was authored mainly by people with direct experience of MLTCs and aims to delve deeply into this issue. We wanted to write something grounded sufficiently in current reality to be feasible but that could start to think about a genuine alternative to the siloed system that cares for us, and for the increasing number of people living with MLTCs. In short, something that could be truly transformative.

As a co-author of this work and a person living with MLTCs, here are some thoughts from me on what it could feel like to be treated and cared for within that alternative system.

First, everyone I receive care from would see me as a person with multiple conditions, not just the condition they are expert in. Then I could be confident that the different possible causes of a symptom, including the interaction of health conditions or treatments, or the possibility of a new, as yet undiagnosed problem, are being fully considered. It would be clear that the different clinicians involved in my care communicate with each other, so that I don’t get contradictory, or just plain wrong, advice. That would mean, for example, that scheduling of vaccinations reflects the fact that I’m immunosuppressed, rather than me having to call up and say it every time to prevent an error in my care. It would mean that someone with HIV can take the right medication to prevent cardiovascular disease because they are confident that their care providers have discussed how statins are reacting with their HIV medications.

Second, there would be a system where the logistics of care make sense for people with MLTCs. For me, the most obvious one relates to blood tests. I’d like them to be as infrequent and as convenient as possible, but I’ve had virtually identical blood tests taken, for different conditions in different facilities, on consecutive days, because the IT systems didn’t speak to each other. And I routinely have to take a half day off work to have blood taken at a hospital, more than 90 minutes from home, because the hospital doesn’t think my GP practice can be trusted to organise the right tests or is able to expedite the results. (I’ve given up asking for this now, but the message that you’re not looking at me holistically, and that my needs aren’t very important, come over loud and clear. Plus, if you’re not confident in my other health care providers, why should I be?)

Third, when I need it, I’d have help to navigate the system. For example, the second time I got Covid-19 no one could tell me whether I needed to take antivirals, which had apparently been lifesaving the first time around. I tried to get answers from secondary care, from my GP, from the specialist pharmacist but no-one would make the decision, so I made it myself, based on far from good information (patient involvement in decision-making is good, patients making the decision because no one else will is not). For occasions like this, I would have a named person to go to who can help unlock the complex system and get me the right answer, without me having to call multiple services.

Given the growing number of people living with multiple conditions, getting all this right should be a priority, but despite getting satisfaction questionnaires seemingly every time I enter a health care facility, no one has ever asked me how I feel about the whole of my care, for all my health conditions. I think I’ve given up expecting the health care system to see me as a whole person. But as the numbers of people affected grow, and because we also need to ensure not just the best outcomes and patient confidence in the system but also the most effective and efficient use of resources, perhaps it’s time to think seriously about co-designing a service that is genuinely responsive to the needs of people with MLTCs and remove the duplication and confusion. We hope our work starts to make headway on this.